‘Well, I’m gonna get out of bed every morning… breathe in and out all day long. Then, after a while I won’t have to remind myself to get out of bed every morning and breathe in and out… and, then after a while, I won’t have to think about how I had it great and perfect for a while.’ — Sam Baldwin (Sleepless in Seattle)
It was the 17th of April 2002, the skies were clear, the weather was average for that time of the year and the day began as normal for ME.
I was relentlessly struggling to keep on going.
It’s my viral hangover, I would tell anyone who was available and willing to listen. However, waking up feeling like I was about to come down with a serious bout of flu was becoming an almost daily occurrence resulting in a melancholic state engulfing me.
Today was no different. My head ached like it was being pounded, throbbing and pulsing with even the slightest of movements. My eyes burned as though someone were twisting hot pokers through my pupils and deep into my brain. My throat felt swollen into my ears and stung as I swallowed. My heart pumped in my chest pulsing up into my head with every turn. My every particle felt afflicted and I was utterly miserable.
With a body heavy and sunken into the plush mattress, I reflected, I don’t know how much longer I can endure this, going on to further barricade myself with an onslaught of questioning and accusatory negative self-talk.
‘Stop!’ I spiritedly censured aloud.
I was working on mindfulness and this was the first step in order to put an end to the unhelpful thought and belief patterns and to begin ‘stillness’ and simply ‘being’ with my symptoms. No punishment, no questions, just acceptance and living in the moment.
‘Are you ok babe?’ my husband and the love of my life called from the en-suite. ‘Not good?’ he added.
‘Nah,’ I glumly responded, allowing the tears to escape.
‘There’s a fabby cappuccino on your bedside. Do you need me to get you anything else?’ he asked with his usual kindness and concern. ‘Do you need your tablets?’
‘Thanks, it’s okay I’ve got them here but I’ve no water, do you have any upstairs?’
Appearing out of the bathroom a half-naked Sam said, ‘here you go,’ as he handed me a condensated glass of water.
The two magic yellow bullets slipped down easily with the refreshing water and I dropped my head back down onto the comforting pillow, hoping for bliss to befall me.
Where do I ache most? What did I do yesterday to cause this? I hate feeling like this! When will I be well again? My mind was in a constant barrage of thoughts and unanswerable questions.
You really should abstain from this kind of talk Annie, it doesn’t do you any good, it is what it is, I chided, gently bringing me back to the here and now.
Often, it would be only my head and eyes that hurt and once the pills began to work I might manage the day with less pain and in a place where pain didn’t bother me so much although it was still there.
Today it was my neck as well. It felt stiff and tight to move, bending it forward was painful. I couldn’t make my chin touch my chest and as I tried to it sent pain gushing down my spine, pain that ricocheted off and out of control like a firework pushing into every space and cell of my aching body. I felt bruised and battered all over.
Today was a bad day.
I wanted to turn over and go back to sleep, allowing the tablets to work as I drifted into a land where pain and sickness didn’t exist.
However, that leisure was not mine. Although Sam would always say, ‘rest meine schöne Schönheit.’ What he really meant was, rest but not while I’m about. And if I did it would have too many subtle and sometimes direct knock-on effects that the best thing was to get up and get going. It would save trouble in the long run. Plus there was Jonah to sort out, I had to get him to school in less than two hours and it would take at least an hour for the tablets to kick in enough for me to be able to cope with a school phobic five-year old.
As my feet touched the floor I felt the firework effect again. Only this time it was rushing up from the bottom of my feet deep inside up the length of my legs, legs that used to be so strong, long and slender.
With much deliberation I reminded myself, I’m gonna get out of bed every morning, put one foot in front of the other, breathe in and out all day long, and then after a while, I won't have to think about how I had once had it great and perfect. And although any memory of great and perfect was growing dimmer by the day I clung onto it like life depended on it, daily visualising and intending a well Annie, whose body would conform in every way. I could see her now, once again dancing through life.
That would be nice. I reminisced a smile and the day began as I put one foot in front of the other.
With Sam at work and Jonah safely being cared for at school, the early morning frenzy was over, and in one and a half hours I would be able to take two more tablets. Rather than anguish over how bad I felt and supposing all kinds of dreaded possibilities, I decided to meditate, endeavouring ‘acceptance’ and just ‘being’ with the uncomfortableness of my pain, or better still establishing my intentions as reality. What was happening to me? I was turning into some kind of valetudinarian.
I got my Titanium G4 Powerbook and loaded iTunes; ensconced on my huge dusky pink polka dot floor cushion I began meditation.
Following the instructions I positioned myself comfortably, closed my eyes, and began paying attention to my in and out breaths.
Sometime later I opened my eyes feeling peaceful and full of hope and went to the front door to collect the post I’d vaguely heard drop while I was meditating.
Opening the brown envelope, I glanced towards the sender’s details; it was from my visit to the consultant a few weeks back. It read
It was my feeling that when we met that you had nuisance physical symptoms, but without a serious medical cause to underpin this. It is possible that you might have a chronic fatigue syndrome or fibromyalgia, but there is no pointer to anything serious or troublesome. With a bit of luck things will gradually improve with time …
That was all it said.
As tumultuous thoughts and feelings welled up, threatening to spill out, I tried to console myself thinking, at least I have some kind of diagnosis at last. Yes I have chronic fatigue syndrome or fibromyalgia. But do I really have a diagnosis, is that what this is?
Of course over a span of seventeen years of being ill I’d heard of these things and on easier days had wondered if that was what I had. But still it all seemed to make a mockery of the pain and weird symptoms I was contending with. My interpretation of such was of something far more serious.
I read the letter over and over and thoughts raced through my pounding head.
It was my feeling that when we met that you had NUISANCE physical symptoms …
NUISANCE! What a stupid and simplistic word to use. ‘Nuisance to who?’ I shouted, ‘you or me? I can assure you they are much more than a bloody nuisance to me!’ I belted out, feeling the anger and distress rising inside of me. I wonder how many jobs he’s had to leave because of being too ill to do them, and then not being able to access benefits owing to lack of diagnosis. ‘NUISANCE’ indeed, I seriously think not! It’s more like a fatality; yes it feels like I’ve just been given a living death sentence.’
It is POSSIBLE that you MIGHT have a Chronic Fatigue Syndrome or Fibromyalgia ...
‘What on sodding earth are they talking about? They’re supposed to be the experts, why else would I keep going to them for answers? POSSIBLE and MIGHT just isn’t good enough, I need to know what is wrong with me.’ I continued going on with myself.
There is NO pointer to ANYTHING SERIOUS ...
‘Well matey, maybe you want to be in my skin when I’m so poorly that I’m petrified I might bloody well die, then you wouldn’t be saying that would you?’
That was it. That was when the tears began to flow, first falling and then gushing out of my eyes, flooding down my cheeks into my lap. I was sobbing and shaking with seventeen years of frustrations and concerns.
My mind flicked to the final insult:
With a bit of LUCK things will gradually improve with time …
I reasoned, well, if it’s LUCK that’s gonna fix me, it’s taking a long time coming, seventeen years of illness so far hasn’t been fixed by LUCK so why should the next seventeen be any luckier?
Doctor's comments like these are all well and good if you don't have to live with the bizarre and scary symptoms that I have on a day-to-day basis. They are much more than just nuisance physical symptoms that you can become accustomed to; they feel extremely serious. CFS/ME, Fibromyalgia, or whatever you want to call it, could well describe what is wrong with me. But was that it? Nothing more? No assistance? No help? No fix? No Tablets? No future appointments?
What was I to do? What did it mean?
Today it meant that I was being minimised, my symptoms were being made insignificant, and I was being told that how I felt wasn’t serious.
To me it meant I was still alone with ME.
© 2014 A Diagnosis © Denise Mijatovic (2011).